CD Part VIII

(note: a reader suggested that I include a brief reminder of the definition of Cognitive Dissonance with each essay for our memory impaired readers.)

Psychologists use the term "cognitive dissonance" to describe the bothered state of disagreement, sometimes pained state of mind that occurs when new evidence contradicts a current belief or outlook. When such dissonance occurs, either discarding the belief or discarding the new evidence must occur to resolve the conflict.

Human language is learned. Great flexibility in expressing ideas is possible by forming word combinations. To learn, individuals must generalize their understanding to expand beyond the examples seen while they are learning.

700 million people use English language around the world. It is the most widespread of the world’s languages. English is the language of aviation, computing, diplomacy, science, and tourism. Two thirds of the world’s scientific papers are written in English. It plays a part in the cultural, economic and political life of 55 countries. More than 70% of all mail is written and addressed in the English language. This incredible language dominance is unparalleled in history since before the Tower of Babel. It gives us an opportunity to affect positive global change in reference to people with disabilities.

We choose words to refer to things, the properties of those things and relations between different things. The way we phrase what we say and write implies meaning to the words we choose. It also adds to the meaning of the words and relation between the concepts that the words define. Hearers and readers usually need to consider the context of a phrase to interpret it correctly. We form our opinions and understandings subjectively. This influences our interpretation of language.

The term 'vegetative state' was first coined in 1972 by Drs. Jennett and Plum. It is my belief that the use of this phrase when referring to people and the associated use of the terms 'vegetable' and 'cabbage' which are widely used in America and England is derogatory.

In my advocacy work, I’ve written many people to request positive language changes. I’ve been told that an effort to develop an alternative phrase to "vegetative state" may be in vain. I disagree. I’ve been told it would be logical "to simply better educate professionals as well as lay people regarding the true meaning of the phrase." Again, I disagree. It is impossible to override the negative perceptions involved in language usage because it occurs automatically, immediately in the mind of the receiver. These perceptions can be addressed by changing the way we refer to people with disabilities. To reduce and overcome dissonance, we need to learn new ways of conveying the messages that affirm humanity and ability.

Our language is (by design) meant to convey messages. The process of message conveyance occurs by pictorial means or imagery in the mind of both the communicator and the receiver. The images created by words are subjective in nature. Every culture has built language around images that convey and illuminate ideas. We can convey fear and shame with our words. We can reduce others by humiliating them. We can inflict pain, agony and distress upon others with words. Everyone knows this from an early age. Children learn this and express it whenever they say, ‘I hate you’ to another person. Our word choices and the order in which we use them can cause massive amounts of dissonance.

The medical meaning of ‘vegetative’ will always be lost to the dehumanizing ideas it creates when used in reference to human beings. Because of the confusion of the term "vegetative" with "vegetable" many people and organizations are advocating that an alternative term be used. In the United States, the term ‘vegetate’ is used as a slang reference to being lazy or inactive. This use further hinders people who are given this label by medical and media persons.

Regardless of the fact that the term ‘vegetative state’ is so deeply entrenched in the neurologic and neuromedical literature, change must happen to stop the dehumanizing of the people to which it refers. Vegetables do not have rights under the United States Constitution, people do. When a person is labeled ‘vegetative’ the general public automatically loses sight of the value of the human being. Decisions with life or death consequences are made by other people whose perception of the individual experiencing the reduced state of consciousness is affected by the terminology used in reference to the patient. Civil rights of persons experiencing reduced consciousness are routinely violated because they are perceived to be ‘less than’ human, indeed, ‘vegetables.’

We only need to look at the African American civil rights struggle to realize the importance of changing language. Language barriers reduce the ability of all persons in society to perceive the reality of the abuse. Contrary to the children’s song, "Sticks and stones can break my bones, but names can never hurt me," I would submit to you that names do indeed hurt people. Sometimes to death.

All facets of society need to be addressed in relationship to the terms used to refer to people who experience loss of or reduced consciousness and reduced or impaired cognition. True, we have the power to ignore the language used against us. But we have no power to override the negative images that these labels create in the minds of others. It is this automatic attitude forming and reinforcing aspect of language that most affects people with disabilities and causes cognitive dissonance.

People are especially conscious of how they differ from others. We notice differences in people from other regions, social groups, and ethnic groups. We notice differences in physical characteristics, in dress, in speech, in patterns of social interaction, and in valued or attention-getting qualities. We also notice differences that are projected by language.

Each American has the freedom to speak any way they please. This is guaranteed to us by our Constitution. I’ll not argue against this important, basic right. However, I will describe how the words we use can affect others and reduce their quality of life by reinforcing negative attitudes. And I’ll continue to advocate for improvements without infringing upon the right to free speech. The choice of course is left to the individual speaking or writing about people with disabilities. Those who believe they are enlightened and progressive will embrace the ideas presented here.

In 1989, I gained my first understanding about language barriers. This happened in Galveston Texas. I was in the midst of the divorce attack from my ex-wife. My personal struggle with cognitive dissonance was in full swing. She used the reality of my cognitive disability against me in one way, and used my non-disabled appearance against me in another way. But right at that moment, we had no hearings scheduled. So I was able to fly to Texas for Operation: Empowerment (OE).

All of the costs were covered or I would not have been able to participate. This fact made it possible for people from all over these United States to attend without incurring personal expense. Otherwise, OE probably would not have happened. I attribute this to the efforts of Andrea Williams. She made it happen. She overcame cognitive dissonance in her life and in the planning process to bring us all to Galveston. Her enlightened approach made it work. In the years since, others have taken her ideas and promoted them as their own, but those of us who were there know who made it happen.

During one of our break-out sessions, several groups formed to discuss the barriers we faced after brain injury. Every group independently determined language to be one of the primary barriers to our enjoyment of life after disability. This amazed me. How could every group come up with the same ideas? We were people from all over the country. Each group was facilitated by different people. Yet we all realized that we were facing the very same obstructions to our full participation in society. I determined to fight language barriers from that point forward. Operation: Empowerment left an indelible mark upon my heart and soul. It was the beginning of my battle for speech that affirmed people.

Some people argue that vocabulary changes are unnecessary. They claim that people with disabilities are over reacting and excessively sensitive. However, we only need to look at the way in which society has changed its verbal references to other minorities to see the impact that terminology and jargon has on a group of people.

All through history, word labels have been used to segregate and separate people from each other. The labels carry unspoken images to convey messages. Words are used to refer to properties of things and relations between things. The unspoken references reinforce attitudes and negative connotations which in turn impact behavior. The descriptions we use to characterize others can act like soldiers planting land mines that injure them. They brand us in the minds of the rest of society. In most cases, the weapons are deployed from within the mind of the receivers once they are covertly planted. The battle takes place beneath the surface of our mind. Every minority group can cite examples of disempowering language usage.

Stereotypical classifications act like military reinforcements to the monstrous negative attitudes that are entrenched in our culture. Each of the debilitating attitudes is supported by the words we choose and use to describe people with disabilities. These attitudes are also reinforced by the order in which we use the words we choose.

Phrases help us to speak of different relationships and the relation between words in the phrase. The connections between the concepts that the words designate are also controlled by the way we phrase them. We rely on the context of a phrase to interpret it. This feature of human language is probably the most important.

Our language allows us to combine two nouns together to form phrases. Consider the following:

Everyone understands that the pie is an apple-type, the chair is used with a desk and the handle is specific type used for an axe. We know that the modifying words designate a category of item. In this sense they change the meaning of the thing. Likewise, to modify the word person by placing the word ‘disabled’ in front of it, designates a type of person.

Instead of affirming the person first, the modifying word ‘disabled’ creates a subcategory of people. Negative connotations are formed in the mind of the receiver, thereby reducing the perceived value of the person with disability. Surely, it can be argued that this does not happen in every case. Nevertheless, the process is one that occurs automatically in a significant portion of the population. And it is disempowering, causes cognitive dissonance and it can reduce the quality of life of people with disabilities.

In our battle, we need to be adamant about the use of words that affirm the person first. To fight discrimination and the dissonance it causes, we must insist upon the use of positive vocabulary choices and avoid negative terminology in reference to persons with disabilities. Collectively, people with disabilities form the largest minority group in the world. We have the power to overcome the enemy communication brigade. We only need to assert ourselves to make massive change happen.

If it is necessary and relevant to use a disability label at all, then the following examples can be useful.

Always use ‘person first’ language when referring to anyone with disability. When we put people first, we set people free. This practice must be carried into all aspects of spoken and written communication. Words have forms and their meanings. Meaning is at the core of language. When referring to people who have experienced brain injury, avoid such negative primitive wording as the following:

The people who have experienced brain injury and related disabilities must be the first to stand up. We are millions strong, yet we are separated by perceived differences. We have accepted disability labels such as Aphasia, Vertigo, Epilepsy and a host of others that carry adverse associations and keep us apart. We must face off with this army of negative connotations together. We can and must insist upon language that asserts our humanity. We need to maintain and use expressions that are uplifting. We have to be the ones who call for speech that is positive. In our fight to overcome oppression and the conflict it creates, we must insist upon enlightened vocabulary choices that focus on ability.

If all persons who experience disabilities would unite on this issue, it would no longer be an issue. This is simply because of the ability of the people to make massive change happen through their collective voice. And that would cause some cognitive dissonance among the rest of society.

The fact that a person’s brain was once injured does not necessarily mean that it will forever remain sluggish or dormant. While differences exist, calling a person brain damaged is like calling a person broken armed. A severe arm break might cause lifelong disfigurement and disability. But it does not make the individual equal to a broken arm. The person is still a person. They might happen to experience disability that results from the broken arm. (I know that this is an over simplification. Don’t dump negative email on me here.)

Many people experience sight disabilities. Countless individuals use compensatory strategies to overcome this category of disability. Millions of people use compensations to overcome their inability to see. Some use glasses. Do we call the person with glasses poor sighted? Do we introduce them as such in conversation? No, we don’t. It is not necessary.

Some people choose to wear contact lenses. Do we remind them and everyone else that they have a sight disability? Do we introduce them as ‘sight impaired’ to others? Do they introduce themselves as sight impaired? Do optometrists teach their patients to tell everyone that they are sight impaired? Is it even mentioned as a topic of conversation? Then why do we believe it is necessary to commit this type of offence to those who survive brain injury? If the purpose of saving lives is one based in morality, then why do we continue to oppress the people saved? Why do we focus our rehabilitation efforts only on disability and force language descriptors on people that affirm the disability without helping them to focus on their abilities?

Scientists tell us that almost all cells in our body are replaced with new cells every seven years. That includes brain cells. Scientists once believed that injured nerves could never be repaired. Now researchers at the University of Washington are learning that some nerves in parts of the brain can redevelop or be replaced. Much of their research focuses on general cells that can become specialized cells like neurons.

Researchers at Princeton University have discovered that new neurons are continually being added to the brains of adult monkeys. They determined that this regeneration occurs in the cerebral cortex. Since monkeys and humans have very similar brain structures, researchers believe that similar regeneration occurs in humans. The cerebral cortex is the most complex part of the brain, responsible for higher level decision making and learning. This important discovery can have a significant impact on the way that we view brain injury rehabilitation outcomes. And it can change our perception of people who experience brain injury.

If the seven-year replacement idea is correct and our bodies can regenerate cells and recreate connections, then seven years post injury, a person is living with nearly a completely new brain. The new brain is not injured. Some of the parts that were injured might not be replaced. However, that in itself is not an argument for lifetime brain-damaged labels. Maybe instead of focusing our attention on whatever doesn’t work, we need to look at what does. Instead of calling people brain damaged, we could call them by their name. Instead of calling people in this disability group ‘the brain injured’, we could call them people.

Do human brains stop reproducing cells after injury? Or does the human organism send in reinforcements to repair the damage? What types of nutrients ‘‘feed’’ the cell replacement process? What kinds of substances aid the neurological connection processes? Do certain chemicals help or hinder this process? If so, what are they? Is anyone even looking? Can an extra supply of certain vitamins, minerals and other substances improve the outcome of people who bump their head? I believe it can and does.

"Nutrients can have a tremendous impact on brain health," says Gary Small, M.D., director of the Center on Aging and the Memory Clinic at the University of California at Los Angeles

Experts recommend many vitamins, minerals, and fats to keep our brains working at peak performance. It stands to reason that optimal performance can be achieved by all people by feeding their brains the nutrients needed. A list of nutrients recommended and resources can be found at the end of this essay.

By improving our approach to the natural process of recovery after injury, we might be able to help people to lift themselves up, dust themselves off and live happier, healthier lives. Surely, no one would argue against improving the quality of life of people who experience brain injury. Would they? I mean, really.

We also have people who influence and reinforce negative perceptions about the individuals who experience brain injury and related disabilities by speaking publicly about the ‘right’ to die. Others promote the euthanization of people with severe disabilities. These negative attitudinal reinforcements can be destroyed by cutting at their roots; language.

I affirm the right to free speech, yet I object to the continuing labeling of people as anything other than human beings. We have unofficial communication standards in our society. The current standards mostly exclude disability groups from power. They need to be changed to reflect the value of human life and affirm ability. The new standards can be used in the media and taught in the schools once agreed upon. We can easily teach students by simply exposing them to examples of texts written in the empowering standard and by having teachers model the refined standard in speech. Overcoming attitudes, beliefs and the resulting treatment of persons with disabilities require a great deal of energy sometimes. Teaching a new standard that affirms human life and ability can assist us in breaking the obstructions that are erected by these unfavorable perceptions.

Grass roots groups can have a tremendous effect in a person’s life after brain injury. By pooling information, ideas, and compensation strategies, persons who experience brain injury are able to become a collective force to stand for the rights of all people. We can insist upon terminology choices that affirm our humanity. We can call for affirmative changes in the language standards used in our news and entertainment media. We can demand that our advocates employ the use of words and the order of words that put people in front of the disability. And that can help our people overcome cognitive dissonance and live more harmonious lives.